dcmom

Both girls were obviously sick; fatigued, sore throat, fever, general malaise. Our ped does a rapid and culture together, both were positive on rapid (one had been negative on both culture and rapid a few days earlier), so subsequent culture was not grown out. SO- yes, if we see a downward spiral off abx- we will get RIGHT back on. But, if going off doesn't cause downward spiral, and being on doesn't prevent strep 100%- what exactly is the point? So far, we have never had a chronic strep, or much of a chronic illness problem. They each had strep twice prior to pandas, strep at pandas initial episode (feb 2009, one age 8 one age 5), and both have had strep one time since. My older daughter, almost 11, had always been so healthy. This year, however, she had 2 virus/flu type illnesses, one stomach bug, and strep. It seemed like a lot. Minus pandas, she would have missed 15 plus days of school. Anyway, we are seeing a few new docs this summer, so I really want to think about this prior to those appts.

Now that the summer is here, I am thinking of trying to change things up a bit. I have two daughters (age 7 and 10) with pandas. Pandas was triggered and diagnosed for them almost 2.5 years ago, at the time of a strep infection. Both have had two big exacerbations, along with some bumps in between. Both had pex, which immediately brought them to baseline. They have both been on zithromax daily for almost two years. This spring, we were trying the lyme protocol of multi antibiotics at one time. Both got a strep infection in April, while on 2 abx each (one zith and rifampin, one zith and augmentin) at treatment level doses. We changed to clindamycin Prior to pandas, they averaged a strep infection every 2 years approx- so I do not see as our odds have changed. On top of this, one daughter (maybe both) seems to react to viruses- so antibiotics will not help us there. I am really starting to wonder if the potential for damage and imbalance of daily antibiotics, is worth it. Should we stop the daily, and prophylactic use of antibiotics? Should we just treat the illness, and pandas, immediately and aggressively? I am really thinking of taking a break from the antibiotics for the summer, to see where we stand. If symptoms remain stable- why not? I am just starting to feel really uncomfortable with the daily meds-when I don't know if they are really doing anything. I would love to hear thoughts... Eileen

Laure- I am so sorry. There is a thread on the pandas forum you might want to look at.... It is about helping anxiety. Momwithocdson said she has used one valerian root capsule in the am to calm things down. I just ordered some to give it a try. Am thinking if it could calm things down a bit, might be more benign than advil. I do worry about the cumulative effects of all these meds on the body Maybe this could help hold you over.... I will let you know how it works- I plan on a trial over the weekend, and then will see how it works for school next week.

Michigan pandas- I live in fear of the self esteem stuff every day- it makes me a CRAZY lady. My daughter wanted to be a prof ballerina (I know, she was only 9- I wasn't counting on it), and was in an audition only very serious program, AND she was one of the best in the class. Well- she quit. She did finally go back for a summer intensive- which was great because she could do it- but she no longer dances. I think even though she got over the major anxiety, pandas/ocd robbed her of the JOY it used to bring her. I think ERP is SO important, and wish we could have focused on dance, but at the time she wasn't eating or going to school- so we had to let it go. Now she has quit piano due to ocd(since Dec). She has agreed to play for the summer- but again- I think the joy is gone. It makes me so sad, not that I thought she would be a pianist or a ballerina- but both took hard work and practice, and resulted in successes and triumphs- which I felt were so healthy. KEEP her in those recitals/ competitions- dont let her miss ONE if possible....

michigan pandas- that is the screening test. If that is positive, the lab/doc would follow up with a western blot. Llmd's will not use these test, most will use Igenex (although I have heard of two VERY reputable llmd's who do NOT use Igenex anymore...). It will be impossible to rule out lyme in your dd's case (IMHO). What you are going to have to do is see what works for her. My kids are "classic" pandas after strep. But, both had some bands positive on Igenex. We have tried treating for lyme, which has done nothing whatsoever (good or bad). While I am being careful discounting lyme, I have to think that it is not really their problem. We are able to have an maintain remissions until illness. Lyme is harder (for me) than pandas- I am not dissuading you go down this path, I just think it is important to be prepared....

michigan pandas- Unfortunately, I don't have any solutions for you- just commiseration. My normally outgoing, anxiety-free, enthusiastic nine year old has the same issue. She was diagnosed with mild pandas about 1.5 years ago. In January 2010, she had a major debilitating episode. Among other things, during this time she would not go to school, and would rarely leave my side. She also was not eating, so thankfully we were able to get her in for PEX. After the procedure, she went right back to her normal life, and within a month was 100%. Fast forward to this year. We moved over the summer, and she started a new school (also middle school), with no anxiety, making tons of friends, trying out for school play, and joining many activities. In December she was sick and had an overnight onset (again) of pandas. Lots of issues (including school refusal, refusal to leave the house, hiding her face, major depression, not eating, etc). While pex was out of our reach, we had to do something, so she had iv steroids. This made a HUGE impact. Every issue was just about back to normal- except school. What my daughter has is school refusal due to ocd. She is afraid that she will vomit (and be embarrased) in school. She says she is nervous the entire time. We have had her on a combination of homebound and school instruction. We do the homebound, to keep her up to date with her classes. But we have been working since January to get her back to school. We started with lunch only, and then built out from there, one class at a time. As a parent, it feels slow as molasses. Mondays are typically slight setbacks, and after vacations the same. She was almost back full time, and feeling pretty good, when in mid April she had strep. This put us right back where we started, and we are trying to muddle out from there- she is back up to 3/4 day, but not feeling good. It kills me. She says she hates school now. She is nervous all the time, while there. I wonder how, even if there, she can focus on the work, if she is anxious the entire time. This is a kid who auditioned for a ballet company, and performed with a professional ballet in the nutcracker. She is on antibiotics- which I am not sure do anything for us daily. She is on 12 mg of zoloft. We did not notice any ocd help, but have kept her on it because it may have helped mood. We plan to take her off this summer, to figure out if it is doing anything. She is so great in almost every other way. She is not severe enough for pex, and I am not ready to do IVIG- but she does need help. We are planning to take her to the ocd intensive with Dr Storch in FL this summer, because we need help. I think I may order valerian root now

Jen- There are many moms (and dads) on the forum who have had to push friends and/or relatives to arms distance, because of this. It is TOO much to deal with a pandas child, alone have to listen to non supportive advice. Since this is your family, I would consider giving them a copy of Saving Sammy, along with a note stating that any support is appreciated. Hugs!

Gosh Melissa, I am so sorry. I have two pandas daughters, and both have had eating issues with pandas exacerbations. (one is having trouble right now) Of course, I would advise you to see a gastro, just to rule out any physical issues causing the reflux. IMHO pediatricians are great for the everyday stuff, but not when there is a problem. Ruling out physical issues, will also help your pandas doc. While I am pretty sure it is something due to pandas, as you are, it is helpful to get an "all clear" from the gastro. I will say the harsh reality is your son needs a pandas doc, and a good therapist. You made need to travel for one, or both. We did have a hard time making progress with the food stuff, until they got pandas treatment. Oral steroids, IV steroids, antibiotics and plasma pheresis have all worked at different points. These medical interventions in conjunction with a therapist that specializes in ocd is so important. In the meantime, we did what we needed to get calories and nutrition into the kids, without making it a battle or power struggle. (meals in front of tv, small bite meals, smoothies and lots of snacks). It sounds like, thankfully, your son is still eating, and nutritiously, so your worries are a bit less right now. I would have all nutritious foods available at all times, until you can address this for him. But- I know- it is SO hard. It is a lot of work! My little one (who is skinny skinny to start with, and already eats like a bird) is having lots of trouble eating meals. I just said to my mother- once school ends, I am going to put a big brunch spread on the island, and leave it there from 7-1. This should help alleviate dd's stress, and get enough calories in her, Yet- that is tiring- lots of grocery shopping, cutting, slicing, baking, etc.

I want to add, that I make it sound very easy and calm. By nature, thankfully, I have a calm, patient personality. I am usually able to keep my head in crisis situations. However, parenting a pandas child is SO NOT easy. And, sadly, it is taking its toll on me. A little over two years ago, I loved my life. My kids were a TOTAL joy, every minute. I did not take any moment for granted, and wanted their childhoods to last forever. It pained me to think if them even hitting the teenage years (it still does- but for different reasons). I did everything with them, Europe, musuems, shows, the ballet, lunches, pedicures, etc. I really didn't even want to get sitters. Things have changed. This was a rough year- my older one being homebound for about six months, AND sleeping with me. My younger one being very difficult, and filling in the days at home when her big sister would get to school. I have had to be full time mom/psychologist. They have become very high maintenance. (They had been doing great for about a year, then exacerbation in Dec due to virus, almost at 100% in April, then caught strep). I have had very few moments alone for the last six months. I am so sad for what they have to go through, and most of my time is spent helping them to do what they want (despite ocd), and building their self esteem. I am left with very little time to take care of myself- I try- but the reality right now is there is very little time Sadly, now, in my worst moments, I find myself fantasizing about a time when they are out of the house (college, married, etc). I see my retired parents and in laws, and am wishful for a calm, peaceful life. I could have never imagined feeling this way prior to pandas. So- I just wanted to be honest. I DO discipline with love. patience, understanding AND the help of a psychologist But- it is not all peachy......

I agree with what most of said, especially Laure. My kids (and lots of pandas kids) suffer so much, and tend to lose/avoid things they love- I keep this thought behind everything I do (well I TRY). I do tend to make it a policy NOT to take away anything positive or healthy; playdates, afterschool activities, etc. My kids don't watch much TV (although when doing really poorly, pandas wise, it becomes a godsend to the house)- so that doesn't work. I do find a short "time out" in their room, a conversation about what they did, and what type of behavior they could "substitute", then I like to do a "punishment" that in the end makes them feel better (my kids have SO much guilt when they do something wrong.) For example, in a "temper tantrum/ rage" brought on by ocd issues, my dd ripped two leaves from a new potted plant I have. She felt HORRIBLE after. Her punishment (which helps me, and makes her feel good) is to be responsible for watering the plant daily. I do not always do this well, but I do try to discipline with more thoughtfulness, understanding and kindness than before pandas. Most of our behavior issues revolve around ocd issues. When pandas is in remission, or even just halfway remitted, we have very few issues. DH tends to yell A LOT, which totally escalates the issue, and makes everyone in the house stressed (other pandas child, me and him). This is one of the hardest of the many pandas issues.

I really don't think there would be a "herx" from pandas. For lots of pandas kids (mine included), the infection may be long gone, and what you are stuck with is the autoimmune process. I would take careful daily notes, but look at things on a weekly trend. It is possible that you could see worse days, coincidentally, after abx with pandas, but I doubt a herx. Healing with pandas is sawtoothed, so it will be two steps forward, one step back. Also, antibiotics could (sorry) do nothing for pandas, if it is the autoimmune process you are trying to arrest. I do agree with the others, however, your story sounds like lyme. I think as a parent, sometimes, you just need to follow what is plainly in front of you, rather than get jumbled up in tons of doctors and labs. Your son had a known tick bite, a bullseye rash (which indicates lyme), then flu like symptoms. He was not treated for this (I assume). Within that year he began ticcing. That is fairly straightforward. You won't do him any harm by pursuing the lyme route, and shelving pandas, for a few months. On the other hand, if lyme is the issue, pandas protocol will not serve him well. It is very likely your doc will dismiss lyme. Much of the medical community has no interest in "chronic" lyme. I would work on scheduling an appt with a lyme doc nearest to you, the wait can be long

Hi Jen- I skimmed this thread, and wanted to give you some input. First, I am sorry you are dealing with this. I have two daughters with pandas/ questionable lyme. For both of my daughters, ALL blood testing comes back normal. The ONLY test that showed anything for them was Cunningham's test- high anti neurals. (unfortunately, her study is closed to enrollment). In the last six months we tested for EVERYTHING, and all we got was questionable lyme. My girls have not tics, they have ocd. We were VERY lucky to make the strep connection. Both girls had normal, unremarkable cases of strep prior- with no pandas. Then, the younger had an overnight and snowballing onset of ocd (didn't really understand it was ocd at the time, but knew something bad was happening). She had NO strep symptoms. Her friend was diagnosed with strep, so in desperation I googled strep and found pandas- it was her story exactly. Her older sister had the same experience, strep a few weeks later and the ONLY symptom was fatigue. Neither girl has ever had raised strep titers. So- it IS possible that your child had strep, and you did not know it. However, from your story- it does sound like lyme could be a concern. Lyme's hallmark is starting with a bullseye and flu like symptoms (although not everyone has that experience). Lyme is very difficult to test for, as many doctors will read your results differently. My kids appear to have had some exposure to lyme, yet I am still not convinced they have chronic lyme, or that it is the source of their problems. We have been able to have great, yet temporary, remissions with pandas treatment. As a first line of treatment, for either, starting antibiotics is great. With pandas, by the end of the month you may see improvement (although at some points for my girls we needed more than abx). You will want to note how he responds to the abx. If he responds very well, it may help to push you towards pandas. If you see a worsening (herxing) then I would lean more toward lyme. It is a very confusing road, to say the least. But there is much hope. Certainly, lyme or pandas, one is less complicated than both- so lets hope that is what you are dealing with. good luck!

Timely for us. Just got back labs on my two pandas kids-one daughter both numbers within range (alt 33, ast 28), other daughter's ALT is raised at 98, alt normal at 43. Have not seen doctor yet, not for a couple of weeks. Does anyone know if this is high enough to warrant a phone call about slowing down on abx? She is on 12 mg zoloft daily which is doing nothing- wondering if this is hard on liver (have to look). Both girls are somewhat symptomatic for pandas, tests were done 2 wks ago. I need an assistant

Thanks everyone! The vaccines required are tetanus and the meningitis vaccine. I CAN check titers on the tetanus, but the meningitis is a newer vaccine, and a titer test won't do it. I really don't want to just prove immunity, because I have two kids with pandas, and think this will be an ongoing issue. I want to be able to evaluate with our doc, which vaccines are really needed, and when they should get them. They are sick, and should not have to follow a random schedule for well children. My out of state neurologist did write a note, which they will not accept, because apparently it needs to include an "approved" diagnosis. From my research, only a vaccine allergy, and a recent severe reaction to same vaccine are contraindications. Aids, immune deficiency, epilepsy, chemo (over 6 mos ago), etc are NOT approved contraindications. I am usually up for some research and a fight- but both kids have gone downhill in the last two weeks (after a rough school year), and I am overwhelmed with dealing with them, the rest of the school year, and my TOTAL mess of a house (should be doing laundry right now). This is SUCKING up too much of my time, and all of my thoughts. My pandas docs are great, but they are not organized and responsive enough for this- and frankly, I don't think they know what to do. I emailed one of the NJ vaccine choice sights, and put some feelers out to some moms of autistic kids to get some input. I am planning to go for the religious exemption, its just apparently a hot issue here, as NJ (I think) just passed a correction to the religious exemption (to tighten it up) that states vaccination must be against the "tenets" of your "bona fide religion". I am thinking that it may be partly up to the discretion of each school (in ours the school nurse), and then maybe if the nurse questions it (which I guess ours is), then it goes to the state medical board.

I will agree with most of what Kim has said. A few thoughts: We have found it helpful to have a couple of pandas docs on our team. Many pandas docs lean toward specific protocols, so it is a good idea to have some idea of what type of course of treatment you want, and are able to do, and see docs accordingly. Most parents have to travel to see pandas docs. As far as underlying infection, while I agree with Kim generally, I do think some of the docs might get a little hung up on underlying infection. Do all of the basic testing initially, but if everything comes back normal, then what you most likely are dealing with is an autoimmune response, possibly to an infection that is cleared up. (Dr K is not one of the docs I am mentioning, and this is just my opinion). There is a trial by the NIH plus Yale U on IVIG for PANDAS, I take this to mean that Dr Swedo (who "discovered" pandas) thinks IVIG has great potential in helping pandas kids- if this eases your mind. Good luck!

What part of the country do you live?

So in further research, it seems, they are NOT supposed to question me if I give them a letter that states it is against my religious beliefs. Ugh. I so like to do things honestly. I am an atheist- so I really have no religion, by strict definition, but I guess if I did have a "religion" it would be NOT to inject my kids with toxic substances. I think I am going to have to go this route- because it appears the medical exemption is allowed for almost nothing. The encephalitis has to be in response to a vaccine, and within like 7 days or something.... I will keep y'all updated

Thanks Christianmomom. I wish I just did this for both girls when we moved in But, I am honest- and knew I had several docs in my corner with this, so couldn't imagine there would be a problem. Hard to believe after all of the stuff we have been through, I was still so naive. Apparently, from some research, NJ is the worst. They require the most vaccinations of any state, and have very strict rules, they have a very high compliance rate, and (coincidence?) the highest autism rates in the country. The nurse is a bit cold and by the book. I am just afraid she will make a comment to the medical board about the rejected medical exemption, etc. Apparently, NJ does reject religious exemptions. In some preliminary research, it looks like only an allergic reaction to same vaccine prior, or an encephalitis response are medical exemptions. What? I am getting nervous- do not want to homeschool- yet cannot imagine getting the vaccine (by force) when I know she is not healthy enough. I am really hoping someone has something for me

Gosh- NJ requires a letter from a doctor, that states diagnosis and how long exemption should be. Apparently only diagnoses that the amer assoc of peds deems needs exemptions are accepted. I don't know what we are going to do. She is going from bad to worse, right now, and now I have to figure out how to fight this? I feel like I am living in a parallel universe to most of my friends- whose biggest worry is who the soccer coach will be, etc. I feel like Tracie (Doug)- things cannot go on like this.

So yes, it is not hard enough to have two girls with pandas.... And to have to fight with docs and insurance and spend tons of $$ to get them well.... But now, the state wants to force them to be vaccinated, even with dr's note. We are in NJ. Our neurologist wrote a letter stating my dd (going into 6th grade) should be exempted from vaccines (she is required to get the tetanus booster and meningitis vaccine prior to Sept). She did not write pandas (due to "controversy") and termed it Immunological disorder. We just asked for a one year exemption- dd has NOT done well this year re pandas, and is still not at 100%. Well the nurse just called. State medical board only gives exemptions for diagnoses that the american assoc of pediatric states needs a vaccine exemption. Needless to say, pandas and immunological disorder do not count. I have a feeling this nurse is not going to be helpful. I know NJ tends to deny religious exemptions and there is no philosophical exemption. I need help, she is NOT getting these vaccines, now, period. Where will the state medical board be, if she has an episode post vaccination, and needs pex. Will they find a hospital to do it for us? Will they pay? Anyone with helpful info, PLEASE respond or pm me. I am going out of my friggin' mind

Dr Cunningham's test it actually a research study, which may have just closed to new enrollment, due to capacity size reached. Please contact Dr Cunningham's lab directly for the most accurate info.

Oh Tracie- I am SO with you. We have been in a "bump" since January I am trying so hard to stay positive, but it does wear you down. Just remember, you have gotten her well before, you can do it again. Hang in there! Eileen

PANDAS is the acronym coined by Swedo when she started defining and studying the disorder. I think, to simplify things, for scientific/study purposes, it was helpful to have more narrow criteria. She does definitely state that while the children she has studied were initially triggered by strep, they go on to have symptom exacerbations with other triggers. She started studying PANDAS, I believe, in the context of Sydenham's Chorea- which also starts with strep. I think, we do not know if the disorder needs to be initially triggered by strep- but certainly it is possible that many parents "miss" the initial strep trigger, even if it happened. I have two daughters with pandas. The youngest, diagnosed first, was triggered by culture positive strep, and had overnight onset of ocd. She fits neatly into Swedo's box, thankfully, because it made getting help much easier. My other daughter, in hindsight, was triggered by strep at the same time (very few classic strep symptoms, only cultured several times because of sister). She had a very mild onset of ocd, which we missed, and mistook for difficult stage/behavior. Nine months later she had an overnight debilitating onset of ocd from H1N1- and we were sure it was pandas. She did not fit so neatly into the Swedo box, and would have been harder to diagnose, without sister. I think, the main problem is, scientists HAVE to set up parameters for a study, in order to get clear results. These parameters should not be used to diagnose, or determine insurance coverage. Doctors should be open minded, scientific, artists- who practice thoughtfully and carefully, and LISTEN to the parents. If your child changes overnight- they should not put the child off to psych- it doesn't make sense. IMHO it is not the acronym or the original study that is messed up- it is our healthcare system

I tried to search, but it is below 4 letters Who has tried NAC? what dosage? did it help the ocd? Our ocd is not horrific now, but it would help to have something take the edge off? It seems it can be taken with zoloft- does anyone know differently? And, did you see any negative side effects? Thx

Dedee- I am so sorry. While things have not gotten that bad at our house, we certainly were headed there without treatment. We did do PEX as self pay, while we were fighting the insurance company. I didn't want to self pay- same fears as you- but we could not go on, I could not watch my daughter continue to suffer, and thankfully, my dad had offered to pay. We did, ultimately get approval post procedure, and were reimbursed. To be honest, the fact that you are waiting on treatment for the insurance co benefit- I really don't think they give a F about kids, or anyone, so I don't know how much that will sway them. My doctor did put in writing to my insurance co, that they were jeopardizing my daughter's health and welfare by delaying treatment. We also had the HR dept at my DH's company pressuring the insurance co daily. I called daily as well. In the meantime- I did not leave her alone in a room, I pushed as many movies as she could watch, and we read to her for an hour plus per night. It was hard, and it was crisis time. Hang in there!